Category: quotes

Book Review: When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky

Posted on by Grayson

I first learned about Dr. Leana Wen from Stanford’s Medicine X conference. She’s presented to their courses as well on the power of the patient narrative. So when I found this book written by Leana and Dr. Kosowsky, I knew I needed to pick it up.

The goal of this book is to help educate patients on the questions to ask and things to do to avoid being misdiagnosed, unnecessary tests, and unneeded hospital stays.

One of the biggest issues in the last decade, according to Wen & Kosowsky, is the turn to the cookbook approach to health care. You have symptoms A, B, and C, so you must have disease AB. The era we’re in now with this approach is what they refer to as the Era of Depersonalized Diagnosis (the previous eras were Spiritual Healing & Magical Thinking, Early Empiricism & Disease Classification, and the Golden Age of Medical Diagnosis).

This cookbook approach to health care does not work for most. An example was given of a middle aged guy who came to the ER with chest pain… who had also been moving furniture recently. They kept him in the hospital overnight to run tests despite the fact that his practitioners didn’t think he had a heart attack and earlier tests basically showed that he had not.

The best way to fix these types of mistakes? By getting back to the importance of the doctor-patient relationship, of course!

When you go to the ER (or a doctor, but especially in the ER), they essentially want to find your chief complaint and narrow that down to 1-2 words (i.e., chest pain, hip pain, etc). These can often be paired up with pathways, or basically recipes that the doctors have been told to/feel they have to follow to eliminate big picture issues (i.e., heart attack, etc). Oftentimes, the correct chief complaint isn’t entered because someone hears something like chest pain and assumes that is the chief complaint and then follows the pathway. As a patient, you really have to make sure that you assert yourself, which also means asking why docs may be reacting to your story in such a way.

One of the things I loved most about this book was the different sections. There was one about patient stories, and those stories were used throughout the book as examples. There was another about a crash course on diagnosis, a prescription for patients, and another on the pillars to a better diagnosis. Every single section recapped information at the end, which is always great for those of us who have some memory or brain fog issues.

A big takeaway from this book is the advice Drs. Wen & Kosowsky give to patients. There is everything in here, from making sure doctors hear you (and what to do if they don’t) to making sure you have a working diagnosis before you leave to bringing up what you are most worried about to putting your symptoms in the context of YOUR life. Saying your hands hurt and lock up is one thing, but talking about how hard it is to live your day to day live because you can’t bathroom/cook/take care of your pets or kids is another.

The eight pillars to a better diagnosis are: tell your whole story, assert yourself in the doctors’ thought process, participate in your physical exam, make the differential diagnosis together, partner for the decision making process, apply tests rationally, use common sense to confirm the working diagnosis, and integrate the diagnosis into the healing process.

All in all, this book helps to get patients engaged and involved in their own health care – something that has been missing for some time and is also sorely needed. Drs. Wen & Kosowsky even point out that patients often feel as though it isn’t our place to tell the educated white coats they’ve got something wrong – or perhaps worse, to question them.

It’s time that we start becoming active and involved with our bodies, from what we eat to how we exercise to what we perceive as normal (regarding looks, etc) to the health care we receive. If you’re looking for a book to help you get started on that, look no further. This book is one of the better ones I’ve been able to read in a long while – go pick it up!

Book Review: Hot Cripple by Hogan Gorman

Posted on by Grayson
Property of Hogan Gorman, found via http://www.hotcripple.com/

I had to pick up this book. Something just called to me – I’m not sure if it is the hottie on crutches or the bit about the health care system. But I am glad I read this book.

Hogan used to be a model traveling around the world and then began to waitress in New York City while auditioning for acting gigs. One day, she’s walking to work with her favorite chai in hand and is hit by a car. With how bad off the car was, it was clear that Hogan should have died. Instead, she lived and began a fight lasting entirely too long navigating the medical world with no insurance and trying to get help from several organizations.

I’m not going to lie – growing up being sick I immediately began judging this girl at the beginning of the book. She is a fucking model right? She’s gorgeous and has had the opportunity to live a life that I wish I could have. She was always one of the beautiful girls and knew it. She needed a wake up call, but probably not one calling for what she’s gone through. This book is about really coming to terms with illness when you’re not used to it and learning to fight and learning that it is okay to accept help – I definitely have issues with the last one.

At the end of the book, I felt like I could identify with Hogan more than I thought I ever would be able to. She clung to her fashion life when she was sick because it was what was left of what she assumed was the real her. I’m just finally being okay delving into fashion, accepting that my body the way it is now is really me finally. I mean, it only took 20 years right? Nonetheless, accepting what you are or have gone through is really one of the hardest things that anyone can do let alone anyone with new and long lasting limitations.

I think it is a good book to read, but probably better for those of you who lived an actual life before falling ill. It’s probably a million times easier to connect with the author, and that is kind of critical for these memoir types of books. Plus, I take issue with how she doesn’t necessarily think about invisible illnesses in the book – i.e., getting pissed with people and automatically judging them as different because they’re normal.

In keeping with how I seem to write every book review, enjoy some quotes!

I have been issued a food stamp card with a rather unattractive picture of myself on it. I will now be allotted 141 dollars a month for food, which breaks down to about four dollars and seventy-something cents a day. That’s what we poor folk are allowed to eat a day… four dollars and seventy-something cents’ worth of food… The card is in the middle of my kitchen table, just begging to be used, but I don’t have the fortitude to accept it quite yet. I find myself picking it up and staring at it in disbelief several times over the past day. I am  scared of this little piece of plastic, scared to walk into a grocery store and use it, scared of what it says about me. If I use this card in public, I am branding myself a failure. There is a stigma attached to people on public assistance in this country – that they are lazy, that they should get a job, that they have a welfare mentality – and it has clearly crept into my subconscious and is wreaking havoc on what little ego I have left. (120-1)

I have almost made it past the Mohawks and combat boots when a guy with purple hair says, “Man, that is so cool… it’s not that often that you see a hot cripple.” I can’t believe he just called me a cripple. You can’t do that. That is so un-PC that it’s almost to XYZ. It’s wrong and bigoted and prejudiced. Only I can call myself a cripple, and I do it in a self-depreciating way, but you can’t. I don’t see you limping on a cane or in braces. You are not part of the group. If you were injured or disabled, you would be allowed to call me a cripple, and I would say, “What’s up, gimp?” But you’re not, so, stranger, step softly when you walk, and don’t fucking talk. I want to go all Rosa Parks on his wannabe punk-rock ass and blurt out this monologue in my head… (154)

I feel like an alien in my own country. Every time I turn a corner I seem to hit another brick wall. My body feels like a prison. The pain is still unrelenting. Maybe they’re right; maybe I’m not getting better, but I try. I never miss a doctor’s appointment; I follow their instructions and take my prescriptions; I go to physical therapy (or as I like to call it, gimp gym) as if it were a religion; I eat a healthy vegan diet on a food stamp budget of four dollars and seventy cents a day; I do children’s memory games on my computer to try to regain my short-term memory and strengthen my brain. I think it might be better to be an animal; if an animal is sick or injured and not getting “any better” they are put down, so they don’t have to suffer. We have a Humane  Society for our four-legged friends, yet I am struggling to see any sense of humanity in the society I am living in. (159)

I am sobbing like I have never sobbed before, and I can’t stop. I have reached my breaking point, the end of my tether. Whatever you want to call it, I am there. I can’t take it anymore: the lack of humanity, constant pain, doctors who can’t fix me, memory loss, food stamps, disability, Medicaid, lawyers, poverty – I’m done. I don’t want this life. I find myself turning almost without thought and walking toward the Brooklyn Bridge – the bridge I used to run across when I was healthy – and with each sobbing step I take I am more determined and convinced that this is the only way out. I’ve had a few friends end their own lives, and I didn’t understand how things could get so bad that someone would want to kill themselves. But now I understand. When you wake up and it’s dark and you know that there is no hope that today the clouds will drift away because you’ve been hanging on every day, for days, months, maybe years, and the sun never comes. When you’ve been down so long that a smile feels wrong. You’re not fun anymore; all you talk about is your misery and your pain, and people listen (sometimes), but you watch their eyes gloss over in a distant stare. They can’t help you; nobody can, not even yourself. You dress each day in something you used to love, praying that it will magically transport you back to a time when you were happy, but it never does. You’ve stopped dreaming, you’ve stopped hoping, and you’ve stopped living. So this final act will merely be a formality. Finally, it will stop. Finally, I will have peace. Finally, there will be relief. I understand now, my friends, and I am coming to meet you on the other side of this cesspool that’s called life. (190)

Day 21: Adversity #HAWMC

Posted on by Grayson

“The flower that blooms in adversity is the rarest and most beautiful of all.” -Mulan

I’m not sure what to make of this quote to be honest. Part of me agrees and part of me doesn’t.

People have told me that they are amazed at what I have done and continue to do in the face of adversity. I grew up sick, dealt with sexual abuse and assaults, felt helpless watching my sister being beaten by family, and continue to deal with depression and chronic pain issues. Despite all that, I have achieved a lot. I finished high school with honors and an International Baccalaureate diploma, in addition to being one of the valedictorians. I was the first woman in my immediate family line to go to and graduate from college. I started college with sophomore standing due to my IB and AP credits. I continue to work and to live my life as normal as possible, even though it hasn’t turned out really at all like I’ve planned.

I try to carry on being a realistic optimist. I know it sounds like an oxymoron and, to be honest, often feels like one. However, it is who I am.

I don’t think that makes me that rare or beautiful like this flower. I wouldn’t be the same without each thing I’ve gone through but that doesn’t necessarily make me better for it. Every person deals with a set of crap circumstances. These are the things of which life is made. My set of circumstances just happen to surround a very dysfunctional family, assholes interjecting their ways into my life, and Arthur the biggest asshole of all. But things could be worse. I could be my fiance’s aunt, fighting breast cancer a second time and not particularly winning the battle. I could have lost my legs in the Boston bombings. My sister could have died when she had a seizure a few years ago. My mom could have died in the hospital in October.

That doesn’t mean that there aren’t people who clearly have it better than me either, but we all have our crosses to bear. Laura taught me that my hurt could not ever equal the hurt someone else feels. We all handle things differently and we have to help each other through that. As much as she didn’t compare pains and experiences, I know that the things I’ve gone through with my illness will never even come close to what she had gone through. Even as she was becoming more and more ill, starting to die of infection, she tried to help me figure out what was going on with my back (clearly she didn’t know what was happening to her). She did not try to make others feel horrible because she was clearly worse off than them, but to encourage friendship, support, and community. Knowing her made my life infinitely better.

Laura is this rare and beautiful flower, now wilted never to bloom again. The rest of us are simply trying to catch up.

Review: Model Patient: My Life as an Incurable Wise-Ass by Karen Duffy

Posted on by Grayson

I decided to take a break from the HAWMC prompts today to share a book that I love.

Even if you don’t recognize Karen Duffy by name, you probably will recognize her face.

The day after the above picture was taken, Karen landed in the hospital. She had a horrible pain in her neck and it surely wasn’t Clooney related. It took a very long time to narrow down the possible maladies Karen was facing, but she was eventually diagnosed with sarcoidosis, a disease where inflammation causes lumps called granulomas to form in your body. This disease, like many other autoimmunes, can be managed well. The only problem is that Karen’s is in her central nervous system, leading to granulomas that leave parts of your body numb and can be fatal.If that doesn’t do it, she’s the girl in Dumb and Dumber chasing Harry and Lloyd and the girl in Blank Check that the kid hires. She was a VJ for MTV for a while and did a lot of ads with Revlon as well.

Karen’s life pre-illness, as you might be able to tell from the above picture, was freaking awesome. She had gone to school to be a recreational therapist and loved working with the elderly. She was a model and an actress. She dated stars from Clooney to Dwight Yoakam to Chris Farley (note: this book is worth it just for the stories). Clearly, when the illness hit, she was blindsided. Depression sat in that, in addition to the physical effects of sarcoidosis, left her essentially bed bound for a long time. She even missed important events like her sister’s wedding.

She has always been very independent and so the thing that scared her the most was “becoming dependent on other people – on my family, on my friends, even on recreational therapists like myself” (56). She is very blunt in the book about the feelings she had and how difficult it was to do anything, something that is missing in a lot of books about illness. She would go between extremes, from hating being sick and questioning what she did wrong to turning “sickness into a good thing. I remember thinking, Well, if I’m this sick, maybe none of my sisters will have sick kids, because what are the chances of having so many chronically sick people in the same family? Maybe I’m taking the hit for everybody. Kind of like that fellow Je… never mind” (60). I have to say that before I met so many others with Still’s, I felt that way too.

At one point, Karen was bed-bound for quite a long time and it wasn’t until a famous friend stepped in that she got the right kind of care – and found out how close to death she really was. Luckily, she got the right kind of care, including MTX and prednisone, to shrink her granuloma and really save her life.

In the middle of all of this, she started working again and met the love of her life even if she didn’t know it yet. She never really took the steps to educate him on what happens with her disease, how rare her case is, and how little the chances of her surviving this were. He found out all of this on his own, around the time they decided to get married.

I grew up thinking Duff (Karen’s nickname) was the coolest. She was the epitome of early 90s style, with her short hair and signature 90s outfits. She really was all over, from her movie roles to MTV to Revlon ads. She is one of the first models I remember, and she even admits that many people liked her as a model because she was beautiful, yes, but an achievable beautiful – normal girl beautiful instead of Cindy Crawford drop dead gorgeous. To find out that she deals, on a daily basis, with similar feelings and pains as I do was shocking to me.

I really recommend this book. There are so many feelings and issues Duff deals with that many people with chronic illness also go through, and it made me feel less alone. It was also comforting to read the chapter written by her husband and to get more insight into how it may affect relationships.

I’d like to share some further quotes from this book. Some are from a chapter written by her husband, John, and they are notated as such:

Even when I felt able to, I didn’t want to go out, I didn’t want to face people and be judged, be compared to my old self. I didn’t want to have people casually ask me how I was doing. I’d either have to lie or come out and say, “I’m really ill.” I didn’t want to lie, but I didn’t want to tell the truth, either. I didn’t want to talk about my illness because I couldn’t quite believe it myself. I withdrew from even my closest friends because I was ashamed, and I didn’t want to reveal my weakness. I was too independent and too embarrassed to ask for help. I didn’t want to burden my friends. (74)

As I became comfortable around other people again, I did start letting my friend pitch in for me in practical ways, like bringing me dinner and running errands. But I’d needed to know that they were doing it because they loved me, not because they pitied me… helped me appreciate that my parents were helping me out of love, not as a duty. (80)

[Check out page 95 for tips on how to have a comfy hospital stay]

What I loved from the first about John was his character. He’s a decent, genteel human being. And I know John doesn’t love me because I’m a model. He got to know me when I was at my absolute worst, and he love all of me, including the disease. (133)

[John writing] Duff hadn’t shared any information about her disease with me, so I felt like I was going through my parents’ drawers, seeing stuff that I wasn’t allowed to see [looking up sarcoidosis issues & survival rates, etc]. I was so scared and shocked that I didn’t know how to deal with it. It was like reading somebody’s journal, and I felt embarrassed I had gone on the Web and looked up the information. I had to talk to someone, so I called my mother. “John, remember the important thing is that you’ve fallen in love with her. Deal with that,” she said. “That’s what’s important, the feeling you have for her, not the feeling that you think she has about what she’s going through. You don’t necessarily know what she’s going through.” (156)

[John} I also didn’t say, “I love you… we’re in this together.” We’re not in it together. She’s fighting it, and I’m helping her fight it, but I’m not sick. I can’t imagine how sick she is. We’re in it together in the sense that we’re a couple, but my role is to help her live the nonsick part of her life. I planned dinners, or vacations, or an afternoon of kayaking. If I knew that she wasn’t feeling well, I’d say, “You know what, let’s stay in tonight and watch a movie.” Instead of staying in because we has to, because Duff wasn’t well enough to go out, all of a sudden we had something to do together inside. (157)

[John] Here’s this person that you love who’s sick, you don’t want to see them sick, you don’t want to see them suffering, you don’t want to see them in pain. Your instinct is to do something, to help in any way you can. Everybody deals with being sick in a different way, and the way Duff deals with it is to take it on by herself. I had to realize that being sick was her job at the time. Taking it on herself gave her the strength she needed. (159)

[John] I really admire Duff. It’s kind of rare to find yourself in a relationship with somebody who’s your hero. I’m married to my hero. What better thing could you possibly imagine? I have so much respect for how she’s dealt with being sick. It puts a lot of things that have come up in my life into perspective. (160-1)

[John] Duff is utterly contemptuous of people who tell her, “This is going to make you a stronger person,” or, “Think of all the good things that come out of being sick,” and that attitude is something that I latched onto from the very beginning. There’s nothing good that comes out of being sick. It’s how you deal with being sick. I don’t think I’m a better person because I’ve helped Duff face her illness, and I have no idea if it’s making me stronger. (161)

[Visit pg 174 for tips on how to spot quacks & scams]

I do believe your body has the power to heal itself, which is why we don’t die of common colds. Whether you call that the immune system or vis medicatrix naturae [healing of nature] doesn’t matter to me. But there are times when your body can’t handle the assault it’s under. Sarcoidosis was a mutiny in my body – renegade cells attacked my spinal cord, lungs, eyes, and skin. Vis medicatrix naturae wasn’t going to cut it for me. (182)

And I’m aghast over the New Age morality that implies that only the poor bastards that fight the hardest against their sickness will eventually kick it, or that it was something internal that brought on the disease, whether it was stress, or imbalanced chakras, or whatever. It’s all just a moderately sophisticated way of blaming the victim, and that’s cowardly, the last refuge of the pathetic. When people suggest that overwork brought on my sarcoidosis, I always say, “I’ve seen hard work. It’s a tiny Dominican woman wrestling a 225-pound invalid into a bathtub. Modeling is not hard work.” As for the idea that I brought my illness on myself, why on earth would I do that when I was at the top of my game? (183-4)

[Visit pg 201 for outpatient tips or 195 for a coward’s coupon asking a former doc to forward your records]

Then, when it dawned on me that yes, I was indeed sick, shame set in. I experienced an illogical embarrassment about being sick, as if I’d brought it on myself, and that people might look down on me if they knew I was ill. I was at the top of my game, in the best shape of my life, I had more job offers than I could possibly take, how could something like this happen? What had I done wrong? I felt weak. I was very apologetic to my parents. I felt I’d failed them as a child. I was ashamed because I didn’t know how to be a sick person, and I was afraid I’d do the wrong thing somehow. I couldn’t face my friends because I couldn’t face myself. I was embarrassed that I’d somehow lost my mobility and my happy-go-lucky attitude. Shame was more crippling at this stage than even the physical effects of being sick, which were considerable. (205)

Despite my deepest fears, it’s not my independence I’ve lost – it’s my innocence. I never took anything seriously, from my career as a model to my relationships. I still try not to take anything too seriously, but that attitude doesn’t come as easily as it did. I’m no longer able to ignore my own mortality hovering in the background. (219)

Book Review: The Pain Chronicles

Posted on by Grayson

The Pain Chronicles: Cures, myths, mysteries, prayers, diaries, brain scans, healing, and the science of suffering by Melanie Thernstrom is by far one of the best books I think I’ve ever read on the subject of chronic pain.

Unlike many who write about pain from an academic perspective, Thernstrom knows what she’s talking about. This book is a mix of academia, folklore and myth, doctor’s opinions, patients’ struggles, and her own journey through our broken medical system. She uses her struggle to go on this journey of discovery and research with us, describing what it is like for those who may not know along the way:

To be in physical pain is to find yourself in a different realm – a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life? (pg 5)

Thernstrom experienced a sudden onset of pain that went by for years without treatment. Eventually she would be diagnosed with an arthritic condition, causing terrible pain in her cervical spine and arms. She normally writes about death, non-fiction mystery type books. And yet, there is something so fascinating to her about the pain she experiences. She investigates cutting edge technologies and has written a few books and many articles on chronic pain, narcotic pain relievers, and more.

She goes through many studies, discussing the crack down and alienation of hundreds of patients who need narcotic medications, the apathy patients view treating their pain with, and even how pain affects genders, ages, and ethnic groups differently. She also discusses the effects of chronic pain on other parts of the body, including the fact that gray matter disappears more quickly in people dealing with chronic pain and so you actually do get more stupid the longer you’re ill… and then sites a study on hip replacements showing how the gray matter comes back once the pain is taken care of! Where are the articles on that to cheer us up on tough days? (For an update on studies regarding this, check out this post)

She spends time with patients and doctors dealing with chronic pain, noting how chronic pain alters ourselves and turns us into essentially three people – “a feared-for self, an actual self, and a hoped for self” that must be cared for by our health care professionals (212). This may help to quell the fears for some of us that we have a tiny case of multiple personality issues. In reality, this may help us. Think of a time where you were scared about a treatment and yet moved forward because the hope you had overshadowed the fears. I for one appreciate my three selves.

I seriously wish I could just email everyone PDFs of the book, but that’s not possible nor is it fair to Thernstrom’s writing abilities! I feel as though I’m not saying enough, and yet to say more would be too much. This book is amazing and has helped me to understand a lot of the processes that go on in our bodies even more than I thought I did – and that’s saying something!

Existential Crisis Mode: Defcon 2

Posted on by Grayson

I’m not an expert on grieving. The only deaths I’ve had to deal with are my great great grandma (I was like 4 maybe & didn’t remember her), my great grandma (who I seem to miss more as my illness grows stronger), a friend I knew in high school (I had one class and did a play with her), and numerous animals.

My great grandma’s death was really the most rough. The worst parts about that was really seeing her in the nursing home beforehand with her unable to speak (they broke her vocal cords during intubation after a stroke brought on by MS) and then the open casket at the funeral. There was the lifeless body of one of my favorite people in the world. My little sister and I couldn’t stand to look at the casket.

My high school friend threw me for a loop because had I not run an errand at lunch instead of after school I could have been with her. It was the first real taste of mortality for me and it sparked my investigation of religions and beliefs that turned into a bachelor’s degree eight years later.

Not that death ever comes at a great time for anyone, but Laura’s death struck at an awkward time in my life. At 24, this is my first semester not being in school as my illness worsening has forced me to choose between schooling and work. I’m still dealing with ongoing depression that I hide from a lot of people, especially those who physically see me. The last two weeks, especially, has been odd for me.

Every so often I go into what I lovingly refer to as my existential crisis mode. I start thinking about death, what happens when we die, and the ramifications of trying to mash together logic and the things I very much hope are real. I have panic attacks because of it. It especially got worse over the weekend when that emotional pain rendered itself physical thanks to my fibro. I even talked with Laura about how badly my back was doing in the last tweets between us (of course now I’m mad at myself for complaining to her).

On Monday, my stepdad had open heart surgery – a 6 way bypass surgery. Mind you there are only 6 tubes running into the heart. They effectively stop your heart and run you on a machine while they take veins from your leg and use them for the bypass. He has horrible diabetes which has resulted in numerous toe amputations and surgeries. Between the actual surgery itself and his poor broken body trying to heal, I’ve understandably been worried. I wanted to go see him today, but I’m guessing he doesn’t need exposure to my cold right now.

So understandably I thought my worries were due to his condition and surgery. I was very anxious all day Monday checking my phone at work. Suddenly I had a calm rush over me and I immediately thought something went wrong in surgery, but he came through fine and I attributed it to caffeine or my crazy body or whatnot.

Tuesday morning, I found out Laura had died the day before and I just lost it. I have lost a few acquaintances in the rheum community understandably but never someone so close, never my sweet friend. I stayed home from work and just cried off and on all day. I ended up being the informer, telling our online friends about what was going on and trying to use my connections and friendships to learn more about the circumstances surrounding her death. It’s been tough to be that person and yet also rewarding. I took it upon myself to take up that role. I needed to have others grieving with me because otherwise I just don’t know how I could handle it.

I never met her in person but I imagine Laura to have been that kind of person that lit up a room when she entered it, because she certainly did it online. She was always personable, caring, sweet and funny. I think everyone who had the great opportunity to call her their friend knows what a special relationship we each had with her. Anyone like that would be hard to lose from your life, but to notice that she and I have the same illness and how much that played a factor into her death… it can be scary. I don’t think of it that way as much because she had such a big personality that even if you didn’t share her illness or a deep friendship you have to be grieving.

Thursday at work I was about to lose it thinking about Laura and suddenly that same calm feeling rushed over me and it hit me that she was trying to comfort me.

I don’t know what I believe about what happens when we die or any of that, but I know that for me I need that to not be the end. I need to believe that Laura and my great grandma are around me and helping get through things. It doesn’t make me any less afraid to die knowing they’re around somehow – I’m horribly frightened of it. Dealing with your mortality as a person with a chronic illness I think dictates a fear or a worsening condition and of losing the battle – especially with a partner that you don’t want to be without. But I know that even though it is hard right now I have them around to guide me a little bit. Maybe that’s enough.

I searched the interwebs for some quotes dealing with grieving and thought I’d just post some below.

You can shed tears that she is gone, or you can smile because she has lived. You can close your eyes and pray that she’ll come back, or you can open your eyes and see all she’s left. Your heart can be empty because you can’t see her, or you can be full of the love you shared. You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday. You can remember her only that she is gone, or you can cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back. Or you can do what she’d want: smile, open your eyes, love and go on.
-David Harkins

“Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”
-Eskimo Proverb

They that love beyond the world cannot be separated by it. Death cannot kill what never dies.
-William Penn

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
-Kahlil Gibran

Unable are the loved to die. For love is immortality.
-Emily Dickinson

Death is nothing at all. I have only slipped away to the next room. I am I and you are you. Whatever we were to each other, That, we still are. Call me by my old familiar name. Speak to me in the easy way which you always used. Put no difference into your tone. Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me. Pray for me. Let my name be ever the household word that it always was. Let it be spoken without effect. Without the trace of a shadow on it. Life means all that it ever meant. It is the same that it ever was. There is absolute unbroken continuity. Why should I be out of mind because I am out of sight? I am but waiting for you. For an interval. Somewhere. Very near. Just around the corner. All is well.
-Henry Scott Holland

Goodbyes are not forever. Goodbyes are not the end. They simply mean I’ll miss you Until we meet again!
– Author Unknown

Love is stronger than death even though it can’t stop death from happening, but no matter how hard death tries it can’t separate people from love. It can’t take away our memories either. In the end, life is stronger than death.
– Author Unknown

May the road rise up to meet you, May the wind be ever at your back. May the sun shine warm upon your face and the rain fall softly on your fields. And until we meet again, May God hold you in the hollow of his hand.
– Irish Blessing

I am not gone I remain here beside you Just in a different form Look for me in your heart And there you will find me in our love which forever lives on In those moments when you feel alone Look for me in your thoughts And there you will find me in sweet memories that burn strong Every time a tear Forms in your beautiful eyes Look up to the heavens And there you will see me Smiling down from God’s glorious skies
-Injete Chesoni

Day 21: Insane in the membrane #NHBPM

Posted on by Grayson

Today, I get to write about mental health… which is something that I struggle with definitely.

Most families are dysfunctional and mine even more so. There is a lot of undiagnosed and untreated mental illness floating around I think and that’s not so fun.

Understandably, growing up with a chronic illness tends to warp minds a bit. I recently read a book about fibromyalgia and found this quote that, I think, describes very accurately children dealing with chronic illness of any kinds:

Claudia Marek, author of The First Year – Fibromyalgia, interviewed a group of children and was amazed to discover 50 percent of her interviewees thought everyone they knew had pain but that other children were simply braver and better at coping with it than they were. Consequently, they were unwilling to verbalize their distress to others. In fact, for many children with FM, the pain they experience is “normal” to them. Since they have not experienced life without the disorder, they cannot distinguish their symptoms as unusual. (14)

See what I mean? I always talk about how thankful I am to have been ill from such a young age, but it’s not like it’s a picnic either. I very much thought that pain was normal and that everyone else just did better with it – even when I knew that wasn’t the case, that is how it always felt to me. And it has always been tremendously difficult to explain what is going on with my body, even when I know the technical terms. Hooray for not being crazy!

Even so, there are enormous feelings of inadequacy, of horrible loneliness, of impending doom at the things I know could be just around the corner for me. I have a lot of frustrations and questions – Why do I have this? Why won’t it go away? How much worse will it get? How much longer do I have before it gets to the point where I can’t do anything anymore? When will I have to apply for SSI? Who will stick around to watch me get worse? The list goes on and on.

Basically, the soundtrack to Rent is constantly playing in my head.

Understandably, a lot of people dealing with chronic illness deal with depression. Much of it is due to fearing the future and missing the past you, the person who was ‘whole’ and could do things. Children with Still’s have a higher incidence of depression than children with other arthritis types because it is so hard on the body and the mind.

Thinking about it, I probably have been dealing with depression since about 6 or 7. I didn’t know how to put it into words, but between Still’s and sexual abuse I had a lot going on. From how everyone treated me being so sick, I figured I would die pretty much being a young kid and that was always tough. Even now, I sit here at 24 years old looking at my engagement ring with a mixture of joy and sorrow – part of me still feels that somehow, for some reason, I won’t make it to that day.

The first time I thought about committing suicide I was probably 8. And it constantly popped up throughout the rest of my life to today… not today literally but figuratively. And a lot of people don’t get why for some reason.

In the June or July of this year, I had my first appointment ever with a therapist. He listens mostly, but is trying to help me sort out all of my anger and my frustrations. Obviously as you can see, there is a lot going on.

It is incredibly important to make a mental health professional a part of your medical team. Even if you don’t see that person very often, having someone to talk to that isn’t a part of a situation – and that you know isn’t going to gossip about it to the rest of your family or friends or tell the person your frustrations deal with about it – well, that’s pretty priceless in my book.

Day 2: Tony Snow was a smart guy #NHBPM

Posted on by Grayson

Today’s prompt is to pick a quotation and run with it.

The secret of learning to be sick is this: Illness doesn’t make you less of what you were. You are still you.

-Tony Snow

Oh Tony, but what if you fell ill so young that you didn’t really have a ‘you’ to begin with?

I always talk about how I’m lucky to have fallen ill at such a young age, how I wasn’t like a high school track star who fell ill or a marathon runner or an archaeologist in the desert climbing up to perilous caves for excavating. I was a little girl in kindergarten. In fact, I fell ill on November 14th, 1993. In a fortnight, my illness will be 19.

It’s hard to think about the kind of person I might have been without this. Surely I would not have been picked on every day in school for being heavier, because I would have been able to be more fit. I wouldn’t have gotten weird looks for having an ace bandage on for one day. I would have been able to participate more in PE. I would have finished graduate school and probably have a better job than the one I have right now. I’d feel a hell of a lot more useful that’s for sure.

But I am me, the little girl whose sexual abuse started not too long after the onset of this odd illness – the little girl who was homeschooled and finished ‘normal’ high school with honors, with an international baccalaureate degree, and as a valedictorian. I think that was all related to my illness though. What do you do when you can’t play sports? You spend time with friends and, if they’re brainy, you all end up as valedictorians together.

I like who I am and I know that the decisions I have made have led me to where I am right now. It is always hard to wonder what I would have been though without my illness.

House Quote of the Week

Posted on by Grayson

“Life is pain. I wake up every morning, I’m in pain. I go to work in pain. You know how many time I wanted to just give up? How many times I’ve thought about ending it?”

Oh House, I do.

It’s so weird to think about House ending. I have learned so much about the practice of medicine and about my own health in general as a result of this fake person, this character that has been in my life for so long now. I started watching because it was a medical show with Hugh Laurie. I kept watching because I really felt so similar to House in odd ways. I knew what perpetual pain was like and I felt like we all had a crutch that we used – visible or not.

Alone, it is really easy for me to get cynical and to act like House. With others in my life, like Wilson, I could be the real me and be more calm.

House is just a character on a show. He’s not real and he’s never been real. But to me, House represents so much. I think ending the show is the right move now, but that doesn’t mean that I like it at all.

I’m holding my breath until I can see what happens next week in the finale. But I’ll miss House and all that he has represented.

To House & Wilson, My Favorite Bromance

Posted on by Grayson
Monday’s episode of House featured Wilson, House’s best friend, dealing with his newly discovered cancer. Wilson opts to go with a dose of chemo drugs so high that he has a 1 in 3 chance of surviving the very aggressive treatment. House decides that Wilson should do this at his place, and so House uncharacteristically takes time off to take care of Wilson.

It was a really hard episode to watch for a few reasons. The main case going on was a little girl who was crazy sick and two parents (one a doctor) trying to figure out what really matters and how to help. Having been a little girl crazy sick, it was not easy.

But even more, watching Wilson be so frustrated at his illness and willing to do whatever to defeat it… It was so real to me. Wilson’s pain, hallucinations, chapped lips… It all reminded me of MTX and how horrible I felt on such a low dose. I know I shouldn’t complain, because relatively speaking – especially in this case – my dose was sooo low. His realization that he wishes he was more of an asshole because then he’d feel like he at least deserved to be sick is something I’ve definitely dealt with too.

Wilson realized that the pain he goes through during this procedure is so similar to what House goes through every day and yet House gave up his pain meds to help him. I totally lost it.

Before Wilson starts the chemo, House makes a martini for each of them and does his version of a toast. I went ahead and removed the parts that Wilson interjected and have re-posted the speech below. Oddly enough, I think it pretty well captures what autoimmune arthritis can do.

To stupidity. Not quite done. To muscle aches, spasms, to your joints feeling like they’re being ripped out and replaced with shards of broken glass. Your stomach fills with bile. When you vomit, it feels like someone is forcing a really hot hammer down your esophagus tearing your flesh, blood dripping down the back of your throat choking and gagging you with the slick coppery taste of burnt pennies.

Day 2: white blood cells are gone opening up your system to attack. Your temperature skyrockets – one second your skin feels like it’s on fire the next second it’s entombed in ice. Every pain sensory in your body is firing at the same time until agony isn’t even a word or a concept. It’s your only reality. You hallucinate. You dream of death. And then the race begins. Can your body claw its way back in time before the organisms and parasites claim you permanently? Win – you live. Lose – you die.